History

A short history of the Champion Centre

The history of any particular innovation is always impacted by local circumstances and context. At the same time, it shares features with other successful innovations. The history of the Champion Centre is a story of ideals meeting realities, of the vision of a single person transmitted to key individuals who play important roles in effecting change, and of advances at times hampered by set-backs that promise to capsize that vision. It is a story of battling against economic and practical difficulties as well as the prevailing notions of intervention and care. It is about 'making it work', and about evolving from a shoestring operation into a world class service. It is also primarily a story of women. While men have played crucial roles in terms of both emotional and financial support of the key players, and have been agents of change themselves in a few cases, the story remains one of a group of pioneering women and of their capacity to work together for many years, for almost no financial reward, in a cooperative non-hierarchical structure.

Intellectual beginnings

The origins of the Champion Centre lie in the initial training Patricia Champion received in the mid-1960's at the Christchurch College of Education, the local teachers' training college. She trained as a speech therapist under the guidance of Dr. Jean Seabrook, an energetic and charismatic teacher who questioned every assumption and drew from a wide range of disciplines to understand how best to serve children's needs. She introduced Patricia to the idea of understanding human development in terms of the biological, psychological and sociological needs and capacities of the infant in a way that integrated perspectives from a range of disciplines. As Patricia says, 'Although we didn't understand it at the time, she [Jean Seabrook] was really using a psycho-biological model of development before anybody else used that term.'

After completing her speech therapy training and a BA in Education at the University of Canterbury, Patricia began to develop her skills in clinical practice with Jean Seabrook, as well as embarking on a master's degree in Education specialising in child development. This combination of practical work and study cemented her belief in the importance of ensuring reflective intervention in which theory and research informs practice and vice versa. During her masters studies, Patricia focussed on the role of infant feeding in the development of mother-infant relationships, using both psycho-analytical and cognitive-developmental perspectives. This work formed a solid foundation when, some eight years later, she decided to pursue a PhD in Education with a focus on the development of the mother/child relationship in dyads where the child is diagnosed with Down syndrome. It was this work which led directly to the foundation of the early intervention programme which eventually became the Champion Centre.

At this point, Dr. Terry Caseley, one of the key protagonists in the Champion Centre story became involved. He had been Patricia's own paediatrician when her two children were born, and was also instrumental in helping Christchurch children receive intervention services through his referrals. Patricia used her study of Uri Bronfenbrenner, Colwyn Trevarthen, and Jerome Bruner to persuade Terry Caseley that the common practice at the time of institutionalising infants with Down syndrome was not serving the needs of either the children or their parents. She suggested that showing these parents how to facilitate their children's development might produce long-term better results. He agreed to be her sponsor at the hospital and to refer to her all the newborns with Down syndrome that he saw in his practice.

The importance of Dr. Terry Caseley's role as facilitator of the evolution of the Champion Centre at this initial stage of Patricia's research cannot be over-estimated. He represented, and continues to represent, support from the medical establishment for the type of multidisciplinary and interdisciplinary early intervention offered at the Champion Centre. Resistance by the medical establishment to accepting the efficacy of early intervention in the late 1970's was extreme, and without Terry Caseley, the road, would have been far steeper and far harder.

The treatment of children with Down syndrome in Christchurch in the 1970's routinely involved admission to Templeton Hospital, a residential facility outside of town, before the children reached school age. Prior to that point, children either lived at home with their parents or were placed in foster care homes. These children were viewed as if they came 'from a different planet'. As Patricia says, 'Once you had given birth to a baby that was not normal, it was not to be valued or imbued with characteristics that were humanising. They were seen as something less than human.'

Before my doctoral research, my only contact with children with Down syndrome was in special schools when I was on placement as a speech therapist. In those days 'Down's babies' as they were known, were sent directly to Templeton Hospital where standard IQ tests were used to determine if the children were educable or not. Not surprisingly, most of them weren't, by this measure. But I had been trained by Jean Seabrook and had read about a new programme in the States where quite different things were going on. I thought, if they can do it, why can't we? But I had to keep my mouth shut at first, because going against the prevailing focus on 'disability' was not going to be the flavour of the month. My research, and the help and support of Terry Caseley gave me a protected environment in which to try out my ideas.

Fourteen Christchurch families agreed to take part in the research project and receive intervention from Patricia, with a control group being formed in Dunedin. The control group children were being raised by their parents (largely because residential care was not readily available in Dunedin), but did not receive formal intervention. Patricia's programme was offered to all the children with Down syndrome born during 1979 and 1980 in Christchurch. Their parents brought them once a week to rooms in one of the suburbs of Christchurch, made available through the Plunket network of infant and young child services . There, the children worked with Patricia as speech and language therapist, including working on feeding, and with Bunty Marshall as physiotherapist. These two worked together in a way that evolved into the team approach that has formed the backbone of the early intervention model ever since. They also empowered the parents to be the children's first teachers, the other key feature of Champion Centre intervention. The goal was (and still is) to respect the parents' experience with and knowledge of their child, show them how to use the techniques modelled and explained by the therapists, and to be as much a part of the intervention team as the 'professionals'. As the success of the intervention became known, it was through the families and friends of those families that word began to spread about this new way of raising children with Down syndrome in Aotearoa/New Zealand.

Terry Caseley was the person who first introduced parents to the idea of the intervention programme in the delivery room. Then he and I would meet with the parents, and he would go and fetch the baby from the nursery. It was really important that he went to get the baby himself, and held it and stroked its head. It always helped the parents to see that he treated the baby as a real baby, and cared for it as a person. It gave them a new idea about how they might be with this baby.

Her research project completed and the degree soon to be awarded, Patricia chose not to walk through the academic doors it opened to her. She could easily have followed the familiar path to professorial status, but chose instead to follow a much more difficult route: to remain in clinical practice, while still maintaining an active academic life. Over the years, Patricia has lectured in an adjunct capacity at both the University of Canterbury and at the Christchurch College of Education, and has continued to read avidly in all areas that affect her work and the work of those who work with her. She has built a profile of publication and presentations, but more importantly she has led and leads a constantly reflective intellectual life in which she monitors new knowledge of human development as it emerges, reading widely in infant mental health, neurology, psychology and anywhere else she sees research able to contribute to her understanding of what early intervention can do and should be doing, and why it works. She felt that not following the traditional academic path was not something which she actively chose. The needs of the children she saw, and the efficacy of the intervention she developed, left her no other option: 'We just had to do something for these babies; we just had to carry on, so I did.'

Sometimes I would just go every day and be with the parents in the hospital and they would just sob and sob and sob and I wouldn't say anything. I'd just sit there and hold their hand and that seemed to be enough eventually to get them through being able to face taking the baby home. I suppose what I learned was that everybody who arrived at this place of producing a baby was a different individual with a different context, a different history. I used to think that I ought to be able to say more, to do more, but later parents would say, 'You being there was enough, you didn't need to say anything. We just felt safe because you gave us some hope and you touched the baby and told us what it meant and that was all.' So I stopped worrying after that.

The Early Intervention Programme

Out of the doctoral research emerged a recognisable entity: the Early Intervention Programme, which needed funding and a status to continue. Terry Caseley explored the possibility of locating the programme within the Christchurch arm of the University of Otago Medical School. The mismatch, however, between the traditional medical school model and the holistic model that the Early Intervention Programme espoused proved to be insurmountable. Instead, the programme found a home under the umbrella of the organisation known as IHC (Intellectually Handicapped Children's Society), a nationwide organisation of support services for children with disabilities. (Terry Caseley was the local president at the time.) Patricia's approach was no more in tune with the philosophy of IHC than it was with that of the medical school, but its manager at the time was willing to live with the discrepancies. So, despite the fact that the IHC sent preschool children to the IHC early childhood centres, whereas Patricia was advocating using the parents as informed first teachers, the Early Intervention Programme found a home, and with it access to (minimum wage) payment for the therapists.

The next phase of development involved adding to the therapeutic team, through personal contacts and informal linkages, individuals whose professional skills and/or personal interests in the Early Intervention Programme drew them to it: Bunty Marshall, Jenny Gibbons, Jan Murphy (now senior speech therapist and clinical manager), and Christine Rietveld were among the first. Jan Murphy has had an enormous impact on the Champion Centre programme, particularly in setting up and guiding the services for children preparing for and transitioning into school. She brought not only a solid speech and language therapy training background, but at a point when such training was still staunchly behaviourist, an understanding of the importance of interpersonal relationships in language development. Her focus on relationships has not only impacted the way children's language development is approached in the Centre, but has also led the way in the counselling role that speech therapists serve in this particular programme.

Many therapists/specialists started as volunteers providing informal support such as making the tea or playing with the children while their parents were being inducted into their roles as teachers; but as therapeutic needs were identified, they rose to the challenge and either educated themselves in what was needed (the use of computer intervention, developed and still run by Hilary Stock, was once such), or exploited training and qualifications that they already possessed. As Patricia says: 'It was a very supportive small community of women who helped one another make it possible.' And if anyone had to leave the programme, they usually found their own replacement who would be equally sympathetic to its goals and who could be counted on to carry them forward.

The network of informal linkages was also what spread the word in the general community about what the programme was doing. The women who worked in the programme often had connections through partners or friends to other sectors of the infant and young child health system, and were able to use these connections to explain to members of the more 'mainstream' network of medical and social services what the programme was about. Most of these women were also mothers of young children, and had friends with young children. Through them, the new attitude that the programme had towards disability became disseminated. Finally, the parents of the children served by the programme played, and continue to play, a vital role in spreading the word. As each intervention session involved bringing parents (or caregivers) of children together, the parents often formed strong bonds with each other, united in understanding how much the programme was achieving. They were the programme's strongest advertisement, and many parents have been very active in that role.

In the early 1980's a new arm of the programme needed to be added because the surviving children from the original study were now three years old and ready for preschool. (Several of the children had died as a consequence of congenital heart problems which were not adequately treatable in those days.) Patricia was convinced that the best place for them was in a regular mainstream environment, but it was clear that simply placing these children in regular early childhood centres without facilitating the transition would be counterproductive. Christine Rietveld was hired to work with parents as they sought a situation that suited their child, and to work with the early childhood centres to educate them on the needs of the children. The programme also employed itinerant teachers to go into the centres with the children to help them integrate and help the centre staff make this possible. (These itinerant teachers were the basis for the current system of educational support workers.) This was often not easy in those days before mainstreaming was commonplace. The staff in many early childhood centres and kindergartens thought that children with Down syndrome were someone else's concern; and while they usually tolerated them, often did little to help them integrate. The model they employed was an 'expert' one, in which the staff knew best and parents were not part of the picture. This was often very distressing for parents, as they saw with renewed clarity how different their child was, and felt powerless to help others see just how much their child could do, and how far they had come.

An exception to the rule was an early childhood centre, part of the Playcentre network , located close to the Plunket Rooms where the programme had started. The key player there was Marjorie Abrahamson whose academic training and strong social justice convictions meant that she both shared the aspirations of the Early Intervention Programme for the children and was in a position to extend the work done in the Early Intervention Programme when children started attending Playcentre. The Playcentre system and the Early Intervention Programme share(d) the belief that development is facilitated by the involvement of parents, and that parents must remain an integral part of the child's intellectual development. The two programmes were, however, not in agreement over how learning happens. Playcentre takes a self-directed approach to children's learning, believing it will happen by itself given the right environment. While this may be true for typically developing children, the Early Intervention Programme has always believed that learning for children with disabilities must be facilitated or it simply will not happen, or will at least not happen to the extent it might. Marjorie shared the Early Intervention Programme stance on this issue, and brought that perspective when she decided to join the Programme herself. She is now the senior early intervention teacher and a clinical manager at the Champion Centre. At this time, several other key clinicians joined the programme through connections with this particular Playcentre, including Gae Cherry, a trained teacher of the deaf and now an early intervention teacher, and Helen Watkins, now senior physiotherapist and clinical manager.

At this point, Patricia was offered the opportunity to see whether the intervention programme she had developed for children with Down syndrome had more general applicability. Terry Caseley began referring other children to her, and it quickly became clear that while every child was different, the basic approach served a wide range of children with a wide range of difficulties. By the mid 1980's the programme was recognisably what it is today, serving children with a range of disabilities from birth to school entry.

As the first group of children (with Down syndrome) grew closer to primary school age they raised the challenge of integrating them into regular schools, and the curricular demands that would be placed on them. As with the early childhood centres, the children were often more tolerated than welcomed, and it was a challenge to help parents find the right environment for their child. Patricia suggests, 'It had less to do with the child and more to do with the culture of the school and with the expertise of the staff. Sometimes staff would get stuck and they didn't know how to unstick themselves and they didn't know how to ask either.' Few staff had been trained for work with children with special needs, and 'They didn't know a lot about how to facilitate their learning which might involve different pathways and different support for learning.' The programme provided (and still provides) help through the system started by Christine Rietveld of Educational Support Workers (ESWs) who smoothed the children's transition to school providing continuity and a source of information and support for the teachers.

As the children who had passed through the programme began successfully to integrate into regular schools, 'the parents who had used the programme were beginning to see that opportunities for their children were not just "pie in the sky". They had started to expect that "their children would have a more normal life". These parents expected to get satisfaction out of seeing their children move through different developmental stages. It might take them a bit longer, but they could achieve certain goals and experience milestones in their development.' (du Plessis 2000:14)

The Early Intervention Trust

The success or failure of an innovative programme depends as much on its administrative context as on the ideas and practices that make it up. Although there were always philosophical differences between IHC and the Early Intervention Programme, there was initially little outright antagonism between them. With administrative reorganisations and changes in personnel in the state organisation of disability services, however, all that changed. In the late 1980's a new advisor for special education was appointed whose views did not mesh well with those of the programme. Neither the philosophies of disability nor the very hierarchical administrative structure worked well for the programme, and it was time to go it alone. The parents and clinicians together decided to form the independent Early Intervention Trust which still governs the Champion Centre. Key players in this stage of development, in addition to Terry Caseley, were Nick Brown, Graeme McNally, Peter Champion, and most particularly, Neil Cherry, whose dedication to supporting the Centre made him a force to be reckoned with.

The Trust is funded by a combination of state monies awarded on the basis of the particular children served by the Centre, direct funding to the programs within the Centre, and charitable contributions. For a while, parents contributed nominal sums to defray some of the costs, but this had to be discontinued as one of the criteria for receipt of certain of the government contributions.

Since becoming independent, the Early Intervention Trust has continued to serve children with a variety of disabilities, adding in the 1990's a new distinctly recognisable population: the premature infant with disabilities. During the 1990's it became clear that medical advances were resulting in more and more viable births at very early gestational ages. Children at 23 weeks now come into the world small enough to fit into an adult hand, and survive. Sometimes the medical consequences for these infants are great, cerebral palsy being among the biggest threats. But even when major health problems are avoided, some form of developmental delay is highly likely, and many of these children qualify for Champion Centre services. As with all other additions to the programme, the strategy has been to go from an analysis of the needs of the children, to working out what they must learn and trying to provide them with the appropriate resources, building on the strengths and resiliences with which children and families present. Since prematurity is not, in and of itself, seen as a category of disability, this has required some considerable lobbying on the part of clinicians to get funding for intervention with these developmentally delayed infants.

Maturity as an organisation has also seen an increase in the number of research projects carried out in the context of the Champion Centre. From the beginning, students, both those who have worked at the Centre and those whose connections with it are briefer, have recognised that a variety of aspects of infant and child development can be effectively studied in the context of its programmes. Some of these studies have been practical, with a focus on the efficacy of particular aspects of intervention offered at the Centre. Others have been more fundamental, using Champion Centre children to better understand important aspects of development in all children. The Champion Centre is in a unique position for research, able to adopt positions and approaches which frequently straddle the divide between medical and educational models, and it endeavours to contribute positively to integrating perspectives.

The Champion Centre

Space has, until recently, been a significant issue. With each new addition to the programme (computer intervention, music intervention, children with different disabilities, etc.) the pressure of finding room for all the programmes has grown. Until very recently (2000), the Early Intervention Trust was hosted physically by a number of different entities, including the Christchurch College of Education, Glenmoor School, and Burwood Hospital. Each had its advantages and disadvantages, but none were truly the programme's home. Finally, after various twists and turns of administrative fate, the Champion Centre, now so named, has come to fruition in the ground floor of a building on the campus of Burwood Hospital in the north-east sector of Christchurch, officially opened on February 21st 2002 by The Honourable Roger McClay, Commissioner for Children. The Centre has large clinic rooms where three or more clinicians can work together, observation rooms for therapy and research, airy well-equipped playrooms, kitchens for preparing bottles and snacks, separate rooms for computers and music, administration and staff. There will probably always be too little space, because the Centre is likely to keep growing, but the Champion Centre finally has a home.

Independence has not always been easy, and there have been several occasions when it looked as if the ship would sink financially. Often only the dedication of staff, willing at times to work without pay, and always underpaid in relation to market rates until very recently, has kept it afloat. Active marketing and fund-raising are now putting a firmer financial base under the Champion Centre, and staff rates of pay are coming into line with market rates. The number of therapists now involved has meant that the egalitarian administrative structure that worked so well when it was a small community of women has had to give way to a tempered hierarchy. It is to the credit of the many experienced clinicians who have stuck with the Champion Centre through good times and bad that they have managed these changes in ways that have preserved the philosophy of the programme.

The level of concern, professionalism, attention to individuals and to the details of who they are and what they can contribute, whether as parent, as child, or as professional, is palpable the instant one steps into the building. For all the changes it has gone through, it is still a community of people who care passionately about what they do and who exude the same kind of optimism and cheerfulness that one sees on the faces of the children. The Champion Centre is a happy place to be, and it brings out the best in everyone who comes into contact with it.

The Future

The Champion Centre has always had, by its focus on family/whanau and child, an approach to human development that fits with, and is sympathetic to, the child-rearing practices and beliefs of indigenous peoples (see further discussion in Chapter 2). Recently, however, the Champion Centre has given more consideration to its responsiveness to the needs and beliefs of Maori people, and has appointed a member of the social work team with a brief to help the centre respond even better to these populations and cultures.

The Centre will no doubt continue to rise to the challenge of responding to new requests for help from children and their parents. And this will necessitate constant attention to resources. Although the major paradigm of disability services has shifted in the direction initiated so many years ago by the Early Intervention Programme, and as Patricia says, 'there is not the same challenge to get over the mountain', the Champion Centre programmes remain different from the state-funded programmes in Aotearoa/New Zealand in ways that we feel make a crucial difference. For example, the use of computers as therapy, and the importance of music therapy are still not generally recognised, and so are not currently funded by government. Similarly infant mental health services are also in need of expansion and support, and are already present in the Champion Centre's programmes through the focus on attachment and early relationships. There is still a need, however, for more mental health support for both children and their parents, and for ongoing and predictable input from paediatric physicians.

While the need for fund-raising and the challenge to respond to new research will remain, the future will see the Champion Centre attempting to be a continuing source of innovation and research. Its role in understanding the long-term effects of prematurity will be developed, as will its role in understanding the consequences of research for the delivery of early intervention services. It will also continue to push the boundaries in demonstrating just how far children can progress in even the most discouraging of circumstances, and will endeavour to attract funds from foundations and government sources to support the research it does. The number of regular staff with advanced degrees is increasing, and their ranks will no doubt be swelled in years to come. Importantly, however, all research activity will be aimed at, directly or indirectly, improving the lives of the children and families it serves. The entire history of the programme has been one in which research has been judiciously married with responsiveness to children's needs. Such a stance will continue to guide the Centre in the years to come.